Engaging patients in identifying risk factors for ALS

Abstract

While policy-driven discourses promote patient engagement in research, its practice is severely limited. Drawing on participant observations and interviews conducted in 2021, we describe a process of research collaboration with amyotrophic lateral sclerosis (ALS) patients and their relatives to modify an epidemiological questionnaire on ALS, engaging patients as experts in the process of adapting the questionnaire to be patient oriented. The two versions of the questionnaire (the original and modified) were administered in the Israeli ALS patient community to explore hidden mechanisms of risk factors for the disease. Our findings demonstrate the process, measures, and impact of patient engagement on questionnaire modification and use. Our qualitative findings illustrate the participants' suggestions for new questions, feedback on biases and gaps, and an unmet wish to present the patients' life story. Our quantitative data illustrate how the patient-oriented modified questionnaire had more questions answered more comprehensively, as well as more identification, measured by patients' willingness to identify themselves when filling out the modified questionnaire.